Monday, August 1, 2011

The Monster List for FMS and feeling rather out there.

As I try to figure out this thing called Fibro (And pull Gracie along because I am pretty sure it is what she has too since she has never been able to get diagnosed either.) I discovered a fellow sufferer who turned her high-octane exhausting career into a wonderful job where she gets to be home but still make money and she helps those of us who suffer with her. She became the Ask.com guru on FMS and Chronic Fatigue Syndrome. She keeps up on research and posts valid tips and things stemming from that research to help us in our own journey's. She has what she calls "The Monster List of Fibromyalgia Symptoms". It has over 60 things related to our lovely life. Some even are their own disorders or diseases. At last count I have 43. I am afraid I am developing another. I feel very frustrated. I feel like such a frumpy failure some days. Not trying to complain and my hubby tells me I am being silly but some days I am lucky to keep track of the girls and cook dinner. I am usually in shorts and a tank. I don't wear makeup. Being raised by a single dad until I was 16 meant that learning girly things never really happened. My amazing guy tells me often how beautiful I am and how amazing and I am so lucky I have that in my life because if I had someone who had no patience for this and who expected some perfectly coiffed barbie all the time I would feel even worse. Ugggg..... That is one of the rough things about this illness. It is ever changing and because we have to limit ourselves and completely change how we do things it means that we learn very quickly if those around us truly love us for better of for worse. I am lucky. I know some who aren't.

On another pity Lila party moment: I had a moment today where I was reminded yet again how very different I am from some of the people who should be closest to me. I don't know how it happened or why but I seem to be even farther away from some of the people I love. I do love them, so much. My life is about love. I just seem to have nothing what so ever to relate to them with. About the only thing we seem to share anymore is a love for my girls but even then it is rough because what we value is so different that often blind trust has resulted in some situations that haven't been ideal. Humph..... This trying to vent but also be respectful is a precarious line. I want to have good relationships with everyone I love but I also don't know how to do that most days. I am happiest at home or with my husband exploring somewhere, metal detecting, shooting, doing what we do. My faith is so important to me yet places a wedge because either they aren't sure they believe at all in anything bigger than themselves or they aren't sure they like what I believe. How do you find a place to heal old wounds to the point of closeness when you are so very different?

I think a lot of the things you are thinking about we all have to deal with. As long as you are good with your immediate family, the rest will adjust itself out or not, but it won't be earthshaking. Your husband and kids matter, the rest are not something you should let bother you.

No easy way to deal with it. Even harder are the friends, acquaintances and associates that truly do not understand both the agony you're in, and the frustration it causes by not being able to have a "normal" life.

We fly everywhere we go because my wife has an agonizing time spending eight or ten hours in a car. Flying cuts that down by two-thirds.

But now, we're BOTH frustrated because I'm in the process of getting rid of a kidney stone (talk about agony. . .) and until then, I'm grounded and cannot legally fly.

Thanks AOA- I think even before my diagnosis I realized that stressful relationships made me sicker so I pulled away from those relationships the most. I pulled away from a lot of relationships because of the drama but if it was already tense I went really distant. Then we got my diagnosis and I learned that I was right in thinking stress made it worse. It hurts to feel like I don't have my own family sometimes. We see my husbands family pretty often and my adoptive mom and sibs because they are all very understanding and loving and know my hiding isn't personal. But all my biological family is pretty distant.

Thanks for this list; I usually avoid fibro articles because they're too depressing. I only have 35 of the symptoms, and I've had some of them most of my life. I work with a woman who has classic "pain" fibro, and she's always suggesting that maybe I have something else. She's the only person I know who actively doubts my condition, even though she saw what happened to me when it manifested itself a few years ago. Do you know fibro sufferers who are like that - a sort of, "Mine is real, yours is all in your head," mentality? My mom and my sister have it, and they're the ones who told me to run like hell when I saw a rheumatologist who "Doesn't like the word 'fibromyanlia.'"

I try not to dwell on it, because I know I don't have much control over it. I've modified my lifestyle so that I can accommodate it when I have an "episode," and I rest when I must. Today, I don't know if I'm fighting a bug or starting an "episode," but I'm staying home from a blogmeet an hour away.

Suz I know exactly the type. Usually they also don't do a ton of research so don't even really know the full scope of FMS. I just roll my eyes. I am sorry you feel off today. Relax. Funny to say but being us I hope it is a quick and easy bug.

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